Fire in the Hole

 

Our group from Virginia meeting with Congressman Scott Rigell

Our group from Virginia meeting with Congressman Scott Rigell

Jim had a great birthday. He turned 52. Hmmm. At one point in my life, that seemed really, really old. Now, it seems young. Not really young, but young. Much too young to have Alzheimer’s Disease.

Sometimes it is almost comical to meet someone new and through the course of the new relationship and conversations explain to them that Jim has this disease. Nearly every single person is taken back. They are a little shocked. You can watch for it, wait about 10 seconds after you tell them and BAMM. You see the complete confusion and then a bit of sympathy and then, if we make them comfortable, calmness and acceptance. All in less than a minute. How I wish our journey through this were so easy to see and work through.

Our visit this past week to D.C. was a quick one. We were able to learn a lot and visit with advocates we have met through the years and re-connect and commiserate together. There are some really awesome and amazing families that are dealing with the same thing Jim and I are, they just don’t have a blog. They have the same pain and suffering and the same desire to help. They have the same needs and the same worries. There are so many of us, it is really scary.

We were able to relax a small bit and we were able to be part of the solution. Jim was awesome. He was full of life and vigor, much more so than I have seen in him in months. It was great to see. I still had to help him with some minor things that last year I didn’t, but overall, I could see his spirits, his demeanor and his thought process had gotten a jolt. He was ALIVE again. Not that he isn’t normally, but in D.C., Jim was witty and chatty and really happy. I loved seeing him this way. He didn’t shave to meet with our elected officials. I didn’t say anything and it didn’t matter. He didn’t put on a tie. It didn’t matter. He couldn’t remember everyone’s name or who we met with or how old he just turned. It didn’t matter. He was still smiling and happy and we had a good time. Again, I was reminded how much more patience I have with him when the kids aren’t around. A few days later I spent 2 days with them without Jim and also had plenty of patience. I somehow need to expand my bubble of patience to deal with all 3 at a time…..a work in progress but one I will not stop striving towards.

Life is so full of challenges. We all face them. Some are much harder than others. Everyone at some point in time faces heartache and pain. It is how we deal with this pain and heartache that will determine the future from that point forward. When the pain and heartbreak are stretched out over years and years, it becomes harder to keep that perspective and stay the course.

While in D.C., we walked the hallowed marble halls of Congress. The first time we walked them I was so nervous I could have thrown up. Ok, not really thrown up, but it was really nerve-wracking. Our first year, I could feel my heartbeat in my chest with sheer nervousness. I was going to be meeting and speaking with someone much more important than me.

This year, my heart skipped beats again, but not from nervousness. I am no longer timid or shy: I have realized that in the 5 years since Jim was diagnosed, there have been no changes in treatments or any new breakthroughs that will stave off this disease. Now when I march down the Halls of Congress my heart beats with determination and I can feel my blood pumping with my resolve to be heard and with the pressure of a time bomb ticking away. When I hear my heels echoing down those spacious hallways, I think of the men and women behind those doors and how they have the power to change the course of my children’s life. They can save Frances and Brad. They can, with one fell swoop of a pen, save my children from falling victim to the same horrendous fate of their Grandmother, Uncle and Father. Now when I walk those expansive halls of Congress, I do so without fear but with shear determination and with no sympathy for excuses. We do not travel all the way there to be given pretexts and put offs. We do not make accommodations so that others will feel comfortable in their ineptness.

There is no more time. The time is now. How can anyone, with any kind of intelligence not see the necessity and urgency? It is written in black and white.

Yes, Jim had a great trip and so I had a great trip. Now we are back to the grind of everyday life.

Thank you to everyone that participated in the forum or contacted their elected official to let them know how important this conversation is. Please keep up the fight and the battle. We are making progress and we will win. We will all keep moving forward until we find a cure.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (4)

4 Responses to “Fire in the Hole”

  1. Karen speaking of Jim’s demeanor in Washington brought back memories of Joe and I on our travels in the early years. Joe was more Joe without Alzheimer’s on our Europe trips. On our Vegas trips he played poker without any hesitation. Then we get back home and the albatross is on him again.
    Beginning our and I use our 11th. year I see his decline. I am here with him until the end. Then????????????

  2. Maureen says:

    I also see my husband at his best when he is away and out with others. It is so uplifting. Back home and he seems to regress. I wish I could come up with a solution to get him the socialization he needs. xoxox Maureen

  3. Allan Schur says:

    For what it’s worth, Deane and Maureen, my wife was on her “best behavior” when we could and did travel. She enjoyed being out and about but was totally exhausted when we returned because “best behavior” required 100% of her energy. Took me a while to figure that out. Travel was a trade-off but overall very good for her… until it wasn’t anymore.

  4. Karen, I continue to be amazed at your strength. I love that you are no longer the least bit intimidated when meeting with lawmakers, who, as you said “have the power.” Thank you so much for all you’re doing. I’m glad you and Jim enjoyed your trip….

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